Planning for the Future
- No one can predict how long someone will live. You should discuss the patient’s end-of-life care wishes as soon as possible.
- These discussions will probably lead you to fill out all kinds of paperwork. People can help you do this if it gets confusing or overwhelming.
- When end-of-life decisions are made ahead of time, it is less stressful for everyone involved.
Your doctor may not bring up this topic because they don’t want to upset you or diminish your sense of hope. Even though it is scary, start talking about it so you can deal with the logistics and then focus on your treatment.
Most patients have a specific idea of what they want their end-of-life care to be like. It is important to recognize that your wishes as the caregiver might not be in line with the patients. Your loved one should make all of the decisions. However, there may come a time when you as the caregiver need to make decisions because he or she cannot anymore. It's important to get a sense of how your loved one feels about certain issues before you are forced to make a choice.
End of life could be a long time away or sooner than you think. The earlier you discuss their preferences, the less stressful it will be when it comes time to make decisions.
Points for Discussion
Getting paperwork in order
- Getting their financial records in order and all in one place (includes account numbers, investments, credit cards, loads, deeds and more).
- Creating a will
- Creating an advance directive (also called a living will). An advance directive outlines their end-of-life medical care choices. See a sample advance directive form from the toolkit or download a state specific form.
- Selecting a power of attorney. A power of attorney designates someone they know and trust to make health care and financial decisions for them if they are unable to do so themselves. They can be two different people or the same person.
End- of-life care
End-of- life care wishes will be spelled out in an advance directive. Here are some examples of topics your loved one will be asked to make decisions about:
- Where do they want to receive end-of-life care? The most common choices are the hospital, a hospice facility or a home.
- Hospice refers to a system of care for dying people and their families. Most hospice care is given at home but can also be given in the hospital or a hospice care facility. Hospice care is recommended when life expectancy is six months or less. To learn more about hospice care, call the National Hospice and Palliative Care Organization at 1-800-658-8898. Or visit www.nhpco.org to find a hospice program in your community.
- Do they want to receive comfort care?
- Palliative care is aimed at making the patient more comfortable and improves quality of life. Hospice care always includes palliative care but palliative care can be given at any stage of a disease.
- When do they want to stop receiving treatment?
- Do they want to receive resuscitation if it comes to that point?
Funeral and Memorial Services
Though this may not be a pleasant topic to discuss or even think about, it is an event that may mean a lot to you and other family members and friends when your loved one is gone. Some people have strong feelings about end-of life topics. People have opinions about the location of these events, participants, music, readings and cultural and religious customs. Other topics to consider include whether or not to have a service, what type of service to have and what they want done to their body. It is important to have this discussion so your loved one’s wishes are respected.
There are many other topics that will be addressed in advance directive. The doctor can help you get an advance directive form and the health care team can help you navigate the decision making.
Bring it up with the doctor
The doctor may not bring up end-of-life issues. It is a difficult topic for people, even doctors, to discuss. The doctor does not want to offend you or diminish you or your loved one’s sense of hope. Though it might be scary at first, it is important to bring up the topic and open the lines of communication early in the process.
Support during this time
Discussing end-of-life care is scary, stressful and can be depressing. Reach out to your support system to cope with your emotions during this time. Here are some tips:
- Journal about your emotions
- Spend time with family and friends
- Seek support from your faith-based organization
- Find in-person or online support groups
- Speak to a social worker, psychologist or counselor
- Ask for recommendations from the cancer care team